Deciding to take part in a clinical trial

This page explains things to think about when deciding whether to take part in a clinical trial, and what will happen if you do decide to take part.

Your doctor or nurse may tell you about a trial for pancreatic cancer that might be suitable for you. Or you might find out about a trial yourself, for example through our Clinical Trial Finder. Talk it through with your consultant or nurse to find out if a trial is suitable for you and to help you decide whether to take part.

You will be given detailed information about the trial, including written information. Make sure you ask about anything you don’t understand, so that you have all the information you need. It’s important to know exactly what is involved before deciding whether to take part.

Our video explains more about how to decide whether to take part in a clinical trial

Questions to ask your doctor or nurse

You might find it helpful to make a list of everything you want to ask when you see your trial doctor or nurse. You could include the following questions.

  • Are there any clinical trials that are suitable for me?
  • What does the trial involve?
  • What tests or treatment will I have, and how often?
  • How long will the trial last?
  • What are the advantages and disadvantages for me?
  • Are there any potential side effects?
  • Who can I talk to if I have any questions about the trial?
  • What support is available for me during the trial?
  • What should I do if I feel unwell or have any concerns during the trial?
  • Who should I call out of hours, if I need to?
  • If the trial involves extra hospital visits, will my travel expenses be covered?
  • Can I leave the trial at any time if I change my mind?
  • How can I be referred for a trial that is not open at my hospital?
  • If I take part in the trial, will it delay me starting my treatment?
  • How can I find out about the results of the trial?
  • What treatment will I receive if I choose not to take part in the trial?

What happens if I decide to take part in a trial?

If you are offered a suitable trial, the doctors and nurses in the research team will explain:

  • the purpose of the trial
  • the advantages and disadvantages
  • what is involved
  • that you can leave the trial at any time.

You will be given detailed written information about the trial. You will also be given the name of a research nurse who you can speak to about any questions you have. There will be plenty of time for you to ask the research team questions and talk to them about what’s involved.

If you do decide to take part, you will be asked to sign a consent form saying that you understand what is involved and agree to take part in the trial. This is called giving ‘informed consent’. You will be given as much time as you need to decide whether to take part in the trial.

Our video explains what will happen if you decide to take part in a clinical trial

Even after you sign the consent form, you can still leave the trial at any time. You will never have to carry on with a trial if you don’t want to.

You will be given a phone number to contact at any time, such as if you feel unwell or are admitted to hospital for any reason.

Screening tests

To check that you can take part in a trial, you may need to have some tests, sometimes called screening tests.

Screening tests may include:

  • blood and urine tests
  • scans, which produce pictures of the inside of your body
  • biopsies, which take tissue samples from your body
  • other tests, such as tests on your heart or eyes, if there is a risk that the new treatment could affect them
  • a pregnancy test.

It may take some time to do these tests and get all the results. Speak to the research team and your doctor about them and how long they take, so that you know exactly what is involved.

The screening tests may find something that means you don’t meet the trial entry criteria after all. It can be very disappointing and frustrating if this happens. If you would like to talk about this or anything else, you can contact our specialist nurses on the Support Line.

You will still be given the best treatment and care that is available outside the trial. Sometimes there may also be other trials you may be suitable for instead. Speak to your doctor or nurse about your treatment options.

Find out more about taking part in clinical trials

Visit our Clinical Trial Finder to find pancreatic cancer trials in the UK

Complaints about clinical trials

Once you have joined a clinical trial, you can make a complaint if you are concerned about how it is being run.

You should first complain directly to the research team that is running the trial. If you feel your complaint is more serious, or that it is not being handled properly, then you can go directly to the NHS Health Research Authority.

Other ways to get involved with clinical trials

You may decide not to take part in a trial yourself, or you may find that there are no trials suitable for you. But if you are interested in research, you can still get involved in giving feedback on trial plans or the direction of research. Our Research Involvement Network is a good place to start if you would like more information about this.

Published February 2022

Review date February 2025